A new study published online by the Journal of Humanistic Psychology examines young adults’ experience of taking and discontinuing antipsychotic drugs after completing a first-episode psychosis (FEP) program. This study, led by Alona Schneidman from the University of Haifa in Israel, finds that the vast majority of participants had a negative experience of antipsychotics. Participants reported psychiatric staff support, a safe environment, and education around relapse were key facilitators in discontinuing antipsychotics while family reluctance was the key barrier. The authors write:
“The present study describes changes in APM use patterns among 23 individuals who completed NAVIGATE, an FEP program. Results indicate that many participants had negative experiences with APMs prior to enrolling in NAVIGATE, primarily reporting emotional emptiness, a sense of an altered self, and significant side effects. During the program, all participants expressed a desire to reduce or discontinue their APM dosage. Specifically, ten participants completely stopped using APMs, six reduced to a minimal dose, and seven maintained their current dose as it aligned better with their familial circumstances.”
The study, published online, is set to appear in a special print issue of the Journal of Humanistic Psychology on first person psychopharmacology
Antipsychotic Discontinuation
Experts have questioned the usefulness of both short- and long-term antipsychotic treatment and pointed to mounting evidence of negative effects. Research has found that starting antipsychotics within one month after first-episode psychosis is linked to worse outcomes. Antipsychotics have also been associated with worse cognitive functioning after first-episode psychosis. One study found that cognitive behavioral therapy for first-episode psychosis led to similar outcomes whether the service user was taking antipsychotics or not.
Research has found that a majority of antipsychotic users would like to reduce or discontinue these drugs. However, one study found that mental health staff was reluctant to assist patients and service users in their efforts to reduce or discontinue their dose. Service users have also reported that psychiatric professionals are not helpful in their efforts to quit or reduce their antipsychotic use. Despite clinician reluctance to assist in antipsychotic dose reduction and discontinuation, some experts have argued that it is their ethical responsibility to do so when patients and service users request it.
People that discontinue these drugs often experience difficult and severe withdrawal symptoms that some service users have described as “the stuff of demonic nightmares.” Research has repeatedly found that slowly tapering the dose down is the best way to avoid withdrawal when discontinuing antipsychotic use. One study found that service users and patients felt empowered when they were able to find professional help with tapering antipsychotics. Research has also found that stopping these drugs results in improved social functioning, better quality of life, and better long-term recovery. One study reported that the recovery rate for patients and service users that stopped taking antipsychotics within two years of starting them was six times higher compared to those taking these drugs for more than two years.
Study Details
The goal of the current work was to explore the lived experience of antipsychotic use and discontinuation among young adults that had experienced FEP and completed NAVIGATE, a program designed to help people recover from FEP through resilience training, family education, assistance in returning to/continuing work and school, and personalized medication management. The authors also wanted to investigate the facilitators and barriers participants experienced in trying to discontinue antipsychotics.
To be included in the current work, service users had to have participated in the NAVIGATE program for at least three months in the past three years, experience with psychosis, and be at least 18 years old. Twenty-three participants recruited by NAVIGATE clinical staff from four Israeli clinics gave semi-structured interviews around antipsychotic use and discontinuation. The interviews were conducted over Zoom, audio recorded, and transcribed verbatim. The authors then analyzed the interview data for recurring themes.
The majority of participants were male (16/23, 70%), and were working or attending school at the time of their interview (16/23, 70%). About half of the participants were Orthodox (11/23, 48%) and secular (12/23, 52%) Jews. All the participants had used antipsychotics prior to attending the NAVIGATE program and all expressed a desire to stop or reduce antipsychotic drug use. Ten participants (44%) had stopped all antipsychotic drug use at the time of their interview, six (26%) had reduced their dose, and seven (30%) were taking their full dose.
The authors identified three main themes in the interview data:
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Pre-NAVIGATE experience of antipsychotic use
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Facilitators to reduction of antipsychotics during NAVIGATE
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Barriers to redcution of antipsychotics during NAVIGATE
Only three out of 23 participants (13%) reported positive effects and benefits of taking antipsychotics before attending the NAVIGATE program. These benefits included symptom reduction, sleep improvements, and stabilization of their condition. Twenty participants (87%) reported negative experiences of antipsychotic use. All the participants that reported a negative experience of antipsychotics spoke about emotional emptiness and numbness. One participant said “I felt super empty inside, and I am sure that it was the pills which created this darkness and vacuum inside my body that I was not able to fill.” Half of participants (12/23, 52%) reported that the emotional blunting led to them feeling inhuman and like their body and brain had been harmed. Participants also reported feeling an altered sense of self on these drugs. One person said:
“When I was taking pills, I lost all my feelings that I used to feel, and those feelings made me the person I am. I was not sad, I was not angry, and I was not happy. I was hollow like a donut without taste of life.” Another reported that “every time I took a pill, I felt I was no longer myself. Everything mixed up for me as if I became another person.”
Eleven of 23 participants (48%) reported antipsychotic drugs causing additional challenges such as weight gain.
“I was 95 kg and it made me ugly, and I was upset about it” said one participant, with another reporting that the weight gain was the most bothersome thing about antipsychotic use: “What bothered me was that during the period of using medication, the medication increased my appetite, I gained 20 to 25 kilos and that bothered and upset me the most.”
Six participants (26%) spoke about the stigma of using antipsychotics, with one saying “it was unbelievably hard that from now on I have a label of being crazy, taking pills. . .and I was terrified that someone would know I got to madhouse, that I was taking pills”
Participants pointed to three main facilitators to antipsychotic reduction: mutual decision-making, a safe, non-judgmental environment, and education around early identification of relapse. Nineteen of 23 interviewees reported that clinicians involving them in decisions around treatment and antipsychotic use as well as asking for their opinions was beneficial in terms of coming off the drugs. Fourteen participants spoke about the environment of the NAVIGATE program as “a shell that kept me safe and protected” which allowed honest discussion around psychosis and antipsychotics.
Some participants also pointed to psychoeducation around identifying signs of relapse as beneficial in discontinuing antipsychotics. It is worth noting that while relapse as a result of discontinuing antipsychotics is a real concern for service users and patients, the negative effects that appear after dose reduction or discontinuation are often withdrawal from the drugs rather than relapse.
The key barrier to discontinuing antipsychotics was family member reluctance. One participant said “my parents don’t allow me to lower my pills dose, they are terrified from another attack.” Another reported that despite their own wishes and psychiatrist support in reducing their antipsychotic dose, their parents were concerned with others seeing them relapse:
“The doctor suggested me to reduce it [antipsychotics] because I was doing well … I immediately agreed because medication has a lot of side effects and also has a stigma. We talked about it together and she’s one who really understands how to do it, but when I shared it with my parents they did not allow me to do it … They were afraid that I will be sick again and everyone around will see this.”
This study had three main limitations. A significant number of people that were asked to participate in the current work declined. Those that volunteered to take part in this research may have had a more positive view of the NAVIGATE program or clinical staff. The authors did not interview family members or caregivers. This may have provided more depth to the findings. This research was conducted with participants from Israel, limiting generalizability to other populations.
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Schneidman, A., Roe, D., Zisman-Ilani, Y., & Shpigelman, C.-N. (2025). Perceptions and experiences of antipsychotic use and discontinuation among young adults who completed a first-episode psychosis program. Journal of Humanistic Psychology. (Link)
Who can relate to parents preferring their child, children to be drugged, rather than bear the public embarrassment should things unexpectedly go pear-shaped. ?
Who can imagine taking a drug that does things to you, that you have no control over. ?
The only way to regain control is to stop taking the drug. But sensible autonomous decision-making may not be the cultural norm.
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“One study found that cognitive behavioral therapy for first-episode psychosis led to similar outcomes whether the service user was taking antipsychotics or not.”
This statement is meaningless. What are the “similar outcomes”?
CBT while psychotic, while first episode psychotic. Interesting.
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How ironic that MIA should display the title of an article in which a first-episode patient complains about having lost touch with her very own self after being started on meds! I remember vividly what that felt like back in 1971! I also remember vividly how, when I complained to my psychiatrist about this, he almost stood there with his stupid fool mouth hanging wide open.
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Hi, Jim: (Gottstein)
I’ve been emailing with Holly O’Donnell recently over at the Bazelon Center. I’m grateful to her for making something clear to me of which I had only vaguely been aware before: that there’s not a lot of philanthropy available for litigation. This certainly explains why the pace of progress for us is so agonizingly slow all the time.
This thought then led me to see why it is that periodically, the government has to pony up money for necessary lawsuits. Am I on the right track with this? Isn’t that what the PAMII Act was/is? I guess that would also be true for the Developmental Disabilities Act which preceded PAMII.
As it turns out, the focus of my personal advocacy has evolved into an effort to even the score with stigma, which is what I contacted Holly about. I spoke to her about an investigation I’d really like to see carried forth into the relationship between drug companies and the news media, TV networks, and Hollywood scriptwriters. I now understand why we can’t simply jump right into this.
However, from your perspective, how could I at least utilize Empowerment Project videoconference time to bring this about? I’m not sure why even the NAMI members who serve on the advisory committees would object to this, don’t you think?
P.S. Later on, I decided to send a copy of this to RFK Jr.
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Santa is back. Hi Santa!
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Fascinating that the parents in the one case weren’t worried about their child’s welfare so much as what others would think if he had another incident!
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Sad actually.
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Sad, indeed!
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A woman once told me that she prefers to stay on neuroleptics because if she had a relapse, she could “make a fool of herself”. I guess that this is a fear shared by many people diagnosed with a mental illness and their family members. Of course this fear is linked to the societal stigmatization of people who are deemed “crazy” or “weird”.
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Imagine taking time off work to actually be with your child, and be financially poorer for that choice. Imagine!
Researchers and reporters and investigators are not telling the whole story. First episode psychosis has several antecedents. We never hear of these lists of antecedents. We hear fabricated narratives such as child (< 18 years) was taking drugs.
Selective truths from all those involved.
Poverty and inferior services aside – children and young adults (18 – 24 years of age) from wealthier families suffer the same fate. The whole problem is them as an individual.
First episode psychosis, should, based on exclusion, with qualified practitioners and or physicians testing for hydration, metabolic imbalances, infections, and liver and kidney functions, and a history of vitamins, minerals, herbs, naturopathic substances given by adults for children to take; as well as a full history of all prescription medications past and present.
Emotional histories given by parents, carers, educators should be disregarded. Psychiatric Reports made for school environments, should be viewed with caution and given little weight, without demonstrating clear evidence that such a report, and the licit drugs that followed were absolutely necessary and the only reasonable available option.
Having witnessed two children (Kindergarten and year 5) in one family being given legal naturopathic substances for no obviously stated rationale or rational reasons – the younger child developed absence seizures and the older child became bored, flat, lifeless, and anxious.
But the parents knew best, and the practitioners went along with the narratives and offered treatments!
First episode psychosis is preventable when fully informed consent has been attended to. Or will the parents drug their child, children regardless?
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Making a fool of yourself as a random rarity, is surely preferable to being permanently intoxicated (adverse effects) by a licit drug, or drugs, whose researchers, marketers, prescribers, have no idea how they work, why they work, or if they work, or the actual harma that they cause.
These prescription psych. drugs and substances, are supposedly a better and safer substitute for alcohol and benzos.
Drugs are drugs. Poisons are poisons. Toxins are toxins.
Tragic stuff, that is worth Billions in annual revenue.
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Vic, I totally agree! And I think that that many people have an excessive fear of becoming a laughing stock to others. I suspect that this fear may be linked to experiences of emotional and verbal abuse, including bullying by peers.
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Who has written to the Researchers and Authors? What was their reply?
– “A qualitative study out of Israel found that most participants reported negative experiences with antipsychotic medication, while supportive clinicians, shared decision-making, and psychoeducation helped those seeking to reduce or discontinue treatment.”
THE STUDY DID NOT INVESTIGATE WHAT CAUSED THE FIRST EPISODE PSYCHOSIS!
The study was aiming for funding (for the supportive clinicians, and or further research) – by the way it reads.
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